I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.

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Wednesday, July 27, 2011

Accepting the Gorilla in Your House

I mentioned a close friend was recently diagnosed with MS and is struggling to accept her new life. Today, another friend (thanks, Denise!) sent along this wonderful essay about acceptance that I will definitely share with my friend. In her current state of stress and anxiety, she is especially appreciative of humor, so I know this will hit the spot. Hope you enjoy it, too:

By Helen Scott-Jackson

"Acquiring a disability is a bit like getting home to find there's a gorilla in your house. You contact the approved and official channels to get rid of infestations of wild animals (in this case, the NHS/doctors) and they umm and aah and suck air in through their teeth before saying something roughly equivalent to "what you've got 'ere, mate, is a gorilla, and there ain't really a lot what we can do about them, see..." before sending you back home to the gorilla's waiting arms.

The gorilla in your house will cause problems in every part of your life. Your spouse may decide that (s)he can't deal with the gorilla, and leave. Your boss may get upset that you've brought the gorilla to work with you and it's disrupting your colleagues, who don't know how to deal with gorillas. You're arriving for work wearing a suit the gorilla has slept on. Some days you don't turn up at all because at the last minute, the gorilla has decided to barricade you into the bathroom or sit on you so you can't get out of bed. Your friends will get cheesed off because when you see them - which isn't often, because they don't want to come to your house for fear of the gorilla and the gorilla won't always let you out - your only topic of conversation is this darn gorilla and the devastation it is causing.

There are three major approaches to the gorilla in your house.

One is to ignore it and hope it goes away. This is unlikely to work. A 300-lb gorilla will sleep where he likes, and if that's on top of you, it will have an effect on you.

Another is to try and force the gorilla out, wrestling constantly with it, spending all your time fighting it. This is often a losing battle. Some choose to give all their money to people who will come and wave crystals at the gorilla, from a safe distance of course. This also tends to be a losing battle. However, every so often, one in a hundred gorillas will get bored and wander off. The crystal-wavers and gorilla-wrestlers will claim victory, and tell the media that it's a massive breakthrough in gorilla-control, and that the 99 other gorilla-wrestlers just aren't doing it right due to sloppy thinking or lack of commitment. The 99 other gorilla-wrestlers won't have the time or energy to argue.

I have known people spend the best years of their life and tens of thousands of pounds trying to force their gorillas to go away. The tragedy is that even if it does wander off for a while, they won't get their pre-gorilla lives back. They'll be older, skint, exhausted, and constantly afraid that the gorilla may well come back.

The third way to deal with the gorilla in your house is to accept it, tame it, and make it part of your life. Figure out a way to calm your gorilla down. Teach it how to sit still until you are able to take it places with you without it making a scene. Find out how to equip your home with gorilla-friendly furnishings and appliances. Negotiate with your boss about ways to accommodate, or even make use of, your gorilla. Meet other people who live with gorillas and enjoy having something in common, and share gorilla-taming tips.

Some people get really upset about this and throw around accusations of "giving up" and "not even trying". They even suggest that you enjoy having a gorilla around because of the attention it gets you (while ignoring the massive pile of steaming gorilla-turds in your bedroom every morning and night, not to mention your weekly bill for bananas). The best way to deal with these people is to smile and remind yourself that one day, they too will have a gorilla in their house."

That's a fantastic analogy Sue. I'm still wrestling somewhere between the second and third way but I can see it's such early days in my daughter's diagnosis that it's got to be that way while I get my head around it. And when you're making decisions on someone else's behalf...the responsibility does my head in. So grateful to have my own health, so impressed at what you manage, parenting and being unwell yourself. Good luck with your gorillas!

Great metaphor. Though I have to admit I have no idea how to tame my gorilla. It won't sit still. It won't be good on outings. And it keeps getting meaner and more unpredictable. I think this gorilla is smarter than me and maybe my best chance is to let it tame me.

I just found your blog, mostly because I have been dealing with CFS and recently started blogging about it. I am stunned by your blog - the candid way you share is a gift. The Gorilla story brought tears to my eyes.. because accepting this illness is a DAILY struggle.. but fighting it is wearing me out. Not that I have the extra energy. I've never written a blog before, and I'm a rather private person, but there's something about this that feels like a connection to folks out there who are dealing with the same thing.Thank you for your courage Sue. I am learning from you, and from the other folks who post comments on your entries.

Y - Thanks for stopping by and taking the time to comment. I'm so glad you're finding my blog helpful.

If you'd like to connect with other with CFS, check out some of the other CFS blogs I've listed (I think they're along the left side column of the blog) - there is a wonderful community of warm, supportive people out there who completely understand what you are going through.

Welcome to our community - whatever else you are dealing with, please remember that you are not alone!!

Oh how true !My gorilla's been with me for 40yrs at some level or other . Yes I do fight it at times just to experience a few hours of life now & again . My gorilla has been really busy this last 10 years so once again it has needed to be tamed where possable,as much at it trys it will not destroy my sence of humour & nor should any of you either . x

About Me

I'm a freelance writer who loves to read and cook. My husband and I have two sons, and we all enjoy travel and being outdoors. My older son and I both have chronic illnesses, but we focus on finding joy in every day!

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